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Dying well – Improving end-of-life care for brain tumour patients

Sacha Langton-Gilks lost her 16-year-old son David (DD) to a brain tumour in 2012. We invited her to share her family’s experience, and her passion for improvement in end-of-life care. This is an edited version of the speech she gave at our first paediatric brain tumour information day, which was held in Southampton in May 2015.

I wasn’t going to do this. I felt quite sick when I read the invitation from the charity. Who on earth would want to listen? I didn’t think I could do it. But then I remembered a few years ago being with a couple of mums on the children’s cancer ward when we had found out one of our friend’s children had relapsed again.

“They’re going home”, we heard. We had looked at each other and no one said a thing; neat terror written across our faces.

But then I was that mother and I realise I need to communicate back across that huge divide, so that it does not remain a silent, unknowable thing.

All deaths are different, like births, and obviously reflect the infinite variety of medical, personal, emotional, financial and mental circumstances of the particular individual and family. My son David – DD as we called him – had a medulloblastoma (there weren’t the different sub-groups when he was diagnosed in October 2007, aged 11).

I say this to make sure that what I am going to talk about happening to our family does not mean it will happen to your child. I am going to talk about the end-of-life care DD received after his final relapse in May 2012 up until his death in the August, aged 16.

I know this is going to be a hard talk for all of us. I shall probably lose it at some point but don’t mind me, I do that. It passes, like the weather. If it becomes too much for you, please don’t for a second hesitate to leave. I understand.

The other thing I want to tackle up front is that I know people see me talk to the press or a group, because of my work with the HeadSmart brain tumour symptoms awareness campaign, and because I can usually hold it together they think something must be wrong with me.

They think I must be somehow different and that stops them from being able to really hear what I’m saying. But I’m not stronger than anyone else; I have just the same amount of love for my child as any other mother. Being able to do this is nothing to do with that. It’s just a way of looking at life in its entirety, which includes dying.

Plus I’m an excellent actress – I trained as an opera singer – and I’ve had five years’ practice pretending to DD that I was fine; I didn’t want him catching my fear. On this occasion, I feel it is so important that future end- of-life care makes families feel less isolated and better informed, that my personal feelings of distress are irrelevant.

Nothing will ever be as painful as letting DD go but I know that having achieved a ‘good’ death – no, an excellent death – with our team for DD is without doubt going to be the single biggest achievement of my life and it continues to be an immense source of comfort.

I want the next families, if they face it, to have the same. So this talk is very good for me and that’s why I’m ok.

Fear is the enemy

For me, fear is the real enemy. I’m no philosopher, so I’ll quote a very dead one, Edmund Burke in 1757: “No passion so effectually robs the mind of all of its powers of acting and reasoning as fear”. So true, particularly when sleep deprived.

I can’t talk about the management plan for DD’s death, without talking at some length about fear clouding one’s ability to make the right decision for your child.

If you deny through fear what is happening, it’s going to be hard to see what to do and then it’s hard for the team to know what you want as a family. Instead they’re making an educated guess. And let’s face it, the British are past masters at not making a fuss, at understating things – so the situation is often not clarified.

What situation am I talking about? The death situation; the dreaded D-word. (Why does C for cure have to be just one tiny letter before D for death when there’s far more than an entire alphabet between them?)

For me, the crux of it is to face at the point of official terminal relapse, and spread of the cancer in your child, that the chemotherapy or other treatment is not curative.

It will not cure your child’s cancer.

It is potentially only going to buy a bit more time. No one can ever say how much time, of course. The discussion, therefore, should be about whether the quantity of life potentially gained is going to be worth it, given the impact of side-effects on the quality of time left for your child and this will depend on the patient and the cancer.

It sounds so easy.

But I cannot tell you how many people/friends I know/have known, including myself at DD’s first relapse, who have not faced up to this reality because naturally we’re terrified to talk about death.

And doctors don’t necessarily make it clear, or even say the word death, because they have in many ways been trained to never allow their patient to lose hope.

“A young doctor learns no more important lesson that the admonition that he must never allow his patients to lose hope, even when they are obviously dying.”

That’s a quote from the American surgeon Sherwin Nuland’s chapter on ‘Hope and the Cancer Patient’ from his best-seller ‘How We Die’. Add to that the phrases people used to say to me: “you can’t give up hope”; “you’ve got to be positive” and “you’ve got to feel you’ve tried everything, right?”

Ironically, they were always said to reassure me, when in fact they usually had the opposite effect – the extra anxiety of trying to explain our decisions. I need to tackle these to get to the root of making the plan for your child because they’re why the decision of what to do at that meeting is so hard.

‘Tried everything’ should not mean every lunatic fringe treatment out there that has the words ‘miracle’ and ‘brain tumour’ attached to the Google Search (often with a huge price tag) in order to give me peace of mind when balanced medical and scientific opinion agrees I will cause my child extra suffering. That’s not right.

Not continuing any more curative treatment is not giving up hope and being negative.

True, the hope that we had during those five years that DD’s cancer would be overcome had to be redefined at that meeting after his second relapse. To me, in retrospect, in essence that’s what the meeting was for.

If you define hope as the expectation of a good that is yet to be, we had to change our expectation from our son being eventually cured to the expectation of a stonkingly good party for him and enjoying what little time he had left. We hadn’t relinquished hope or given up. I’d say having a party was pretty positive, wouldn’t you?

We were not hoping that he wasn’t going to die because that would have been ridiculous, given what his scans looked like at the last relapse. And I did make myself look at them, although I didn’t want to, so I could believe what our doctors were saying. Believe my eyes as well as my ears.

There were dozens of teeny tumours everywhere. It is so hard to take in because you don’t want to. You would give your own life not to. But if my husband and I had denied he was going to die we wouldn’t have had that party straight away and concentrated on making wonderful times and memories in those three months.

Our expectation would have been that he was possibly going to be cured – we were going to be that miracle you see in the headlines.

We would have been in and out of hospital for the chemotherapy we wanted to believe was curative, trying to ignore the signs that he was deteriorating until we could ignore it no longer. Then we would have had the shock of the cruel, evil twin of hope: despair.

And he would still have died but it would have been truly tragic, because he would not have had the fabulous time he did. So not talking about death and not accepting that this is an end of life plan is like Voldemort – not saying it makes it scarier.

If you don’t clarify that the treatment is not curative, then the part of the discussion about your child’s quality of life will not be given the weight it should and you do not have the full range of choices in front of you.

So at that horrendous final meeting when DD had relapsed the second time, we chose with our oncologist and brain surgeon a treatment plan of palliative drugs at home to remove the symptoms of his disease – headache, pain and nausea mostly – but positively rejected any chemotherapy or even steroids that would prolong his life with such a ghastly disease.

Why would we want him to lose his mobility, but more slowly (he’d already lost that twice and clawed it back) and give more time for the pain to increase – that was the big one for me?

We chose maximum quality of life in a shorter time because that was right for our child. He’d already suffered 15 months on intensive chemotherapy, six weeks of full spinal & brain radiotherapy, 11 brain operations and then five months of chemotherapy before high-dose chemotherapy with stem cell rescue (the experimental end of the spectrum from the US). None of it had worked.

This decision is at the basis of the end-of-life care plan and it’s a huge one. There is scant help on the online forums when you’re facing making it, because of the death/Voldemort thing.

The forums tend to say ‘ we’re praying for you’, which is lovely but not enormously helpful in the practical sense of helping me get my head around the situation we’re in. So there are forums for the diseases and forums for the bereaved but nothing in between. And that’s where the fear breeds – in the absence of information.

We plan for birth – why not death?

I think at this point it would be helpful to compare our attitude towards death with that towards the other major natural event in our lives – birth. They’re both natural processes which have a foregone conclusion – baby will come out, terminal patient will die – but for both the detail is unpredictable.

People professionally trained in midwifery or palliative care can have a pretty informed guess at what will happen but for both, they still have to go with the flow and be flexible and adapt to what actually happens.

You wouldn’t dream of giving birth without some idea of what to expect and a plan of what – ideally – you would like. For death, as parents, we are essentially the midwife for our child leaving the world.

But we have to do it with no equivalent preparation – no ante-mortem classes, as it were. We need to get to the point in society where it is as acceptable to talk about a death plan as I am now, even for a child, as it is to talk about a birth plan.

At the moment we are so hampered by taboo and the resulting lack of knowledge of what to expect that it makes it all exponentially harder.

It does not help that the media churn falls back over and over again on cliches: the cancer battle language which takes in what I was just saying about hope and being positive.

The celebrity ‘My Battle Against Cancer’, ‘How I beat Cancer’ or ‘One Teenager’s Brave Fight’ etc.

DD wasn’t a coward for going home to spend what remaining time he had left with his family, friends and pets. Yet that was exactly what some implied – and that I as his mother should make him have more treatment: ‘ you can’t let your child give up, surely?’

That does not help families like ours. People have to hear this end of the story so they’re not effectively bullied by the current state of society’s thinking into doing something that might not be in the best interests of their child.

Now you can absolutely argue that you want to be in denial, and want to deal with it as it comes, but from my experience – having done that at times – it was harder. The fear was still there because I had not addressed it, and it was an energy sapper and stress accelerator at a time when I was already in incredible distress, stress and pain.

Once you face your fear, I promise it’s not as bad – at least it’s not lurking eating up your internal organs (that’s what it feels like).

And what was my main fear when I faced the fact that my child was going to die in the next few weeks (months as it turned out, as his shunt extended his life but unfortunately meant he developed full dementia on top of spinal tumours)?

I most feared we’d have a crisis I was not prepared for and he would be distressed and in pain.

I was not frightened of death itself – I did not want it with every cell in my body but I was not scared of it.

Why? Because I had helped my mum nurse my dad in my twenties and I knew what it was. He died with secondary brain tumours from malignant melanoma. It was calm, his pain was under control and he was at home with us as he wished. He eventually just stopped eating, talking, moving and finally breathing. I learned from my mother managing my father’s death that until the point that someone’s organs fail, they’re not yet actually dying but living with a major disease.

There is a huge difference in adopting this attitude. It means that having accepted DD was going to die at some point in the near future, I wasn’t telling everyone for three months “DD’s dying“.

Rather, we were busy enabling him to live as full a life every day as he could comfortably and happily manage and asking our community to help. When I indulged myself by allowing myself to think he was dying I ruined the precious time because I was in agonies thinking – it’s his last party, it’s his last swim, and so on. I had to get so fierce with my head.

Right, enough psychology.

The practicalities

Our death plan’s overarching aim were the two ‘Cs’: my child must be CALM and COMFORTABLE at all times.

To achieve this, we had two questions to answer at that final meeting:

Given our child has limited time left,

  • what does he want to do with it?
  • what would be the worst way he could spend it?

Those questions led to the decision of palliative medicine for symptoms relief at home.

This sounds very rational. I confess now it’s been written with the benefit of hindsight and my having heard the prize-winning writer and doctor Atul Gawande’s Reith Lectures this year, which I thoroughly recommend.

But this was effectively what we did but in a messier way. We all knew the answers: DD did not want to spend anymore time in hospital or having any more procedures – that would have been the worst thing that could happen.

He loved home, studying science, flying birds of prey, playing with his sister, arguing with his younger brother, watching movies, driving me crazy planning delicious meals (and then constructively criticising them) and talking to his friends. That was how he wanted to spend his time.

He also followed the teachings of Buddha – life is suffering, death is life and so on – so the idea of death did not frighten him but the process did.

So he did ask, the night we got home, why he couldn’t just take a pill straight away if he was going to die soon anyway. Such a good question. I decided not to try and say ‘because it’s still illegal’ but rather to allay his fear of the unknown.

I said , ‘do you remember the other three times you’ve nearly been dead?’ Of course he didn’t because he was out of it. So I continued. “Right, it’ll be the same. You won’t know. We’ll have all the medicines to make sure you can’t feel anything, so we until then we can just enjoy ourselves and party.”

That satisfied him. He did not ask any questions about death after that.

Given that everything about this illness had always been out in the open, DD’s siblings were told that same night we got home from hospital from the final meeting that their brother did not have long left to live. We said there was nothing more the doctors could do to cure the disease.

Holly was nine and DD’s younger brother 14 at the time. Their reaction, in terms of keeping them calm and comfortable? They were shocked initially but then it’s dinner and we’re watching a movie and everything’s just the same as it normally is, so they calmed down.

I have a friend whose very young child died of cancer 18 months before DD.

Her son never asked if he was dying, because at his age the question clearly did not occur to him. He was alive until he wasn’t. What would have been the point of telling him or his siblings?

“Just follow the child” his mum said to me. In the end it was she who gave me the confidence to truly not be scared and keep going at home – her boy died at home with his younger and older sisters and his parents.

When I heard that I thought: if she can do it, I can do it. I know that’s right: for death to be a big event but one within the framework of a normal family life.

It used to be normal, of course, but because our modern medicine and health is so fantastic compared to past times it’s become something that happens to old people, mostly in hospital.

Providing care as parents for DD’s end of life and his ‘good’ death was about maintaining the structure of our family and our home life. It’s not just about one patient.

The last thing a child or teen wants is to be treated as a dying cancer patient – they just want to live normally. It was Holly, the youngest, who was best at this although it was fairly shocking to a grown-up how this would manifest itself.

My favourite example was when we’d got back from a meal out and DD was going up for a rest as he was exhausted.

His sister begged and pleaded with him to come outside and play. He refused and she persisted, finally saying: “but you can rest when you’re dead!”

I was standing behind her with my mouth hanging open in horror and I was frantically trying to think of something to say when DD looked at her and said, “Yeah, alright then”.

Because of course she’s right – you can rest when you’re dead! DD loved that and we grown-ups are rubbish at it, tying ourselves up in knots trying to be sensitive and appropriate.

The role of the clinicians and nurses of our multi-disciplinary team – led by Southampton but encompassing Salisbury District Hospital and our local GP surgery – was to medically support us at home.

We were not sent home to a vacuum and left to fend for ourselves; an enormous team kicked in taking in everything from pharmacists, a pain team, palliative expertise, local district nurses – anything and everything that might be needed. You never hear about this and it’s so important people realise what’s there.

The first thing that happened was a meeting at home with our palliative-paediatric-oncology specialist nurse. She needed to know things and I needed to know things.

I was determined not to have crises and to be prepared, which meant I needed to make myself ask what we could reasonably expect to happen as his disease progressed.

It is so hard to hear in advance but denying it was not going to make it go away. Most of it we had already seen – we’d nearly lost him several times.

That was our advantage – we knew this disease well after five years. It wasn’t going to be another shock. But she told me that a children’s hospice could not cope with a child with DD’s complex medical needs, so that option was not open had we wanted it.

I was shocked by that. I did not understand why until his dementia became really bad. Essentially, I imagine, they could not have had him wandering into other patient’s rooms saying inappropriate things and they would have had to sedate him in bed for the last month. That would have been awful. It didn’t matter at home.

I was adamant DD would never set foot back in a hospital and at this point the nurse remarked that it was much easier to make a good plan when it was clear what the family wanted. This meant immediately our telephone number was flagged as a local 999 call, so that if we needed to call an ambulance they were only allowed to stabilise him, they were not allowed to take him to hospital.

If you do not have this in writing, they have to by law.

For us that would have been a catastrophe. I also signed a DNR (Do Not Resuscitate); his suffering was not going to be prolonged. I’m not sure whether the nurse would have asked me this directly. I know I asked for it because we had had this discussion as a family over my father’s death and my mum is adamant we should never resuscitate her in this situation.

To be honest I can’t imagine how one could make this decision in a crisis situation if you had never given the idea any thought before. That’s why talking about it is so important.

Finally, we were not going to have any more scans – an hour in a scanner, two hours’ round trip away to find out the cancer was more and more: what would have been the point of putting DD through that?

My main worry, which I voiced to the nurse, was potential seizures. I realise now that was because I had no prior experience of them – the usual fear of the unknown. But she told me exactly what to expect, which meant I could warn DD’s siblings or anyone who visited. I was given all the medication we might need and told that if it didn’t work then to call an ambulance to stabilise him.

In fact he never had those violent seizures – he had absence seizures, although I didn’t know that’s what they were called at the time. This is when someone is awake but doesn’t appear to hear, so doesn’t respond in any way. They’re in their own world.

The first time I had no idea what was happening and didn’t know if he would come back. You can imagine my shock when, after sitting there quietly for ten minutes, he suddenly said: “What ‘s for tea Mum?”

I’m not sure who needed medication most at that point! My GP called this an ‘event’ and when it happened, I would ring the telephone number given to me by the team.

Someone who knew us was on call 24/7 to respond. I was so exhausted that to have had to explain what was going on would have been impossible. That was what I needed – reassurance and then information on what might be needed drugs-wise, if it was a new symptom.

The drugs were then delivered to us by our practice. Essentially this meant an ever increasing dose of pain killers and anti-sickness medication and they absolutely did their job. I love pharmacists!

If everything was stable, and there were no ‘events’, I just had to call the specialist nurse on a Friday first thing to say how we were doing.

Before DD’s dementia really took hold, he used to instruct me to tell her to tell the team he wasn’t dead yet, which caused much amusement! The multi-disciplinary team meeting was held straight after our call and the plan was adapted and the whole team updated if new medical issues had come up. That’s how it all worked.

Things only really changed in the last two to three weeks. He really had absolutely no short-term memory and did not know at this point who anyone was or what he was doing. Crucially, what kept him calm was that his body knew it was at home and was on autopilot in a way until the last seizure.

He would wander at night and I could not cope any more so the team called Marie Curie and we then had the same couple of nurses alternating most nights.

It is true that Marie Curie do not usually nurse children but they said that, as he was 16 and – crucially – there was a clear plan in place, they could help.

I did need to take half a lorazepam every night during those entire last three months to actually get off to sleep – crucially, that dosage is not enough to stop you waking if needed – and I acknowledge that this probably saved my life and enabled me to do a good job.

You cannot do 24/7 care for a dementia patient with spinal tumours for weeks without sleep but someone needs to tell you that and I know I was beyond making a decision like that on my own behalf.

The last seizure made it clear that it was no longer safe for him to be up and about because his legs didn’t work. That was the only occasion in those months when he did get distressed.

I knew I was out of my depth. I made the call. The district nurse and my GP came straight over and we switched to injectable medication because he could no longer swallow.

That is always the hardest part: the unknown when you change from one state of care to another. You have to work out what’s happening and then decide what action to take. Once he was sedated, it was such a relief he was calm again.

The final worry was that my husband and I would somehow not be in the room with him when he died. I was terrified to leave him for a second during those four endless days.

Again, this is where experienced nurses reassure. When our Marie Curie nurse arrived at night, we would brief her, she would assess him.

She would tell my husband and I to go to bed to rest and that she would wake us if anything happened.

In the end, the morning DD died, my husband and I and his brother were there with the Marie Curie nurse with extra back-up from my mum and my sister. Holly had gone on a birthday sleepover that night.

I know DD was completely happy as the last lucid thing he had said, four days before, was ‘I love it here’. So we knew we’d done absolutely the best job for him.

So what I really want people to know is that you must not fear. Grieve, yes – the grief of letting your child go, of understanding and accepting – but do not fear death itself. You are not alone.

The American theatrical manager, Charles Frohman’s last words before drowning in the Lusitania in May 1915 were: “Why fear death? It is the most beautiful adventure in life.”

I believe DD understood that.

Thank you for listening.

Copyright Sacha Langton-Gilks/The Brain Tumour Charity

Sacha Langton-Gilks is lead champion for The Brain Tumour Charity’s HeadSmart campaign for the earlier diagnosis of children’s brain tumours

Atul Gawande Being Mortal: Medicine and What Matters in the End, 2014.